Who’s got the Challenging Behaviours?

Screen Shot 2015-04-27 at 11.16.10 amAt the Perth ADI2015 conference recently, one of my abstracts was accepted as a poster presentation, attached here as a PDF Not Just A Challenging Behaviour_ADI2015_jpg for those of you who have asked for a copy of it or who are interested in downloading it. The image here is a screen shot of the top of the poster, which I thought was quite powerful, but my poster, and oral presentation also caused some angst amongst a minority of researchers.

During the conference dinner, one young researcher claimed three presentations, including my keynote, had insulted and offended, and that those of us who believe the terms ‘challenging behaviours’ and ‘BPSD’ are are in fact, a large part of the reason for poor dementia and aged care being the norm, rather than the exception. It was startling that a researcher, who is meant to have an open mind, could be so forceful in telling me she/her research team are right, and we are wrong. Whatever happened to researchers and academics having an open mind, or is it all about them, getting funding for new research proposals, that serve to support their previous work?

To say I was stunned is perhaps more accurate. as I have always thought academics and researchers would, and should, be more open-minded.

Perhaps more like Steven Hawking, who set about to prove his original theory was wrong, once he felt there was a problem with it. The is a true researcher, in my eyes anyway.

Suggesting research is wrong, is not meant as offensive to the researchers. Suggesting care of people with dementia, currently not being done well as the norm, is not meant to personally offend individuals. It is, what I believe as an advocate, simply what needs to be said. There are too many stories of abuse in dementia care, of restraint with drugs and keys and ‘seat belts’. Poor food, boring meaningless activities, and too much of a focus on tasks, rather then person or relationship centred care. That is also what I see, most times I enter an aged care facility.

However, there are some great people out there, working very hard to improve things.

But back to the researchers, of which I am about to become one, so I am mildly nervous about what this might do to me!!

The tendency for academics to focus on research that they believe in, often their own, and research that they believe is right, does not mean it is good or bad research, but also does not make them right. As a researcher, I want to engage in dialogue with people who also have a different opinion to mine, so that we are more open in our learning, more transparent about what we are doing.

Going into a research project, determined to fulfil one’s own hypothesis, is not helpful, or healthy.

Being more rigorous, more willing to listen to the Devil’s Advocates, more willing to consider even for a moment, your own opinion is wrong, and someone else might just be on the right track, is healthy. Regardless of prior research that might indicate the researcher is right.

It was once thought the earth was flat…

Clinicians insisting that dispensing anti psychotics as first line management for people with dementia, regardless of the fact the sector knows it is no longer considered best practice, is to me, tantamount to assault. This is made worse, when the sector openly states they know of the HALT study, and that doing it is no longer best practice, but say, it is easier than the alternative, which by the way, is as simple as what their documentation claims they are doing; they claim they are providing authentic PERSON CENTRED CARE.

But, I and many others believe this propensity to continue to prescribe and dispense anti psychotics, is supported by the term challenging behaviour and BPSD. Whilst we keep being labelled in such negative ways, it is hard for staff to see us as anything else, even if the new BPSD guidelines give better ways to manage the ‘challenging behaviours’. The labels still keeps it fairly and squarely us in the ‘it is our fault’ box, and giving us drugs to stop behaving is still easiest.

So, my final comment to researchers, academics and even the clinicians, who 100% believe me and others who are suggesting the terms BPSD and Challenging Behaviours are a big part of the problem, and the cause of poor care, is please don’t take it personally. I’m not sure if I am right, but I intend to explore it more fully, but I am also pretty sure you are not right either. Let’s work together on this, with open minds.

People like Dr Al Power and I do not mean to offend you, we are simply exploring other ways to see it, which may, we believe, improve care; Al has already had significant success in practice, so he is worth listening to, rather than simply discounting as offensive and wrong!

Some researchers have even told me they feel quite despondent that after 30 years of hard work, with absolutely the best intentions, the health care sector is still getting it so wrong. Perhaps then, they too are, part of the problem.

34 thoughts on “Who’s got the Challenging Behaviours?

  1. Hi Kate, Just re-read your article Q TIP from last year thanks to a post by AmazingSusan.

    Just wanted to say we at Daughterly Care hear you and understand exactly what you are saying.. Quality care systems and careworkers that take the time to understand a person and their experience and don’t see ‘reactive behaviours’ as anything other than an expression and communication and we look for ways / tools to understand that person and meet their needs better. The terminology is bad and further stigmatises people living wih dementia. Clients are often told by less experienced carers from other organisations that “they need to go to nursing home” because of their ‘so called challenging behaviours’ when the opposite is true. They are happy at home and need experienced support to understand, enable and support them.

    Aside from language and attitude that is poor, lack of time and experience is equally a problem.

    We hear and ‘get you’. Good Luck with Australian of the Year and Congratulations on your SA win Kate Lambert, CEO, Daughterly Care

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  4. Hi Kate, love your blog! I was diagnosed with Alzheimer’s last year at the age of 58, I am saddened by the amount of my ‘so called’ friends who have not kept in touch! Is this the norm? Most of them I have known for more than 20 years and it saddens me to think that they no longer want to know me!

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  6. Hi Kate,

    Personally, as a researcher and supposed academic, (hahaha – what a ridiculous title really!!!!), I am actually appalled to hear that you were confronted in such a way by a person who is supposed to be open minded in the realms of research. Research is supposed to be an area where the premise is promoting change, looking outside the square, and dispelling all the stereotypical myths out there in regards to dementia and peopler living with dementia. It is about making a difference and moving forward, not festering in the old negative archaic mindsets.

    I am offended on your behalf that you had to deal with a person of such low ethical understanding on the vast knowledge you bring to the forefront of the industry. Obviously not someone who is going to be the catalyst to change methinks, as the comments made to you arer just plain ignorant.

    How on earth did this person have the gall to question a person who actually lives the disease????? How rigid and narrow minded, and it seems to me, unable to accept the reality that is right in front of him.

    I so wish I had been there by your side to slaughter this persons disgraceful, disrespectful attitude.

    You are my hero – and I do believe it was my highlight at the conference to finally meet you face to face my friend.

    Love and smiles always.

    Leah.xxxx

    • Hey Leah… don’t be offended. I am equally self righteous in thinking they are wrong, and that I am right… I am at least willing to admit I might be wrong, and to explore it more deeply. The trouble with youth, as Winston Churchill said, is it is wasted on the young. I say that in jest though, as the researchers I know, including those who think I am 100% wrong regarding BPSD and Challenging Behaviours, are really lovely people, truly working from their hearts, and doing what they do believe is their very best. It is important we work together, and openly discuss things, and not take umbrage, or take it personally, when we are challenged. That is of course, just IMHO!

      Ps I LOVED finally meeting you in Perth, but was sorry it was not for very long. Stay in touch my friend xx

  7. Hi Kate, another academic and future researcher here 🙂 well done and you will be an excellent researcher. I am currently preparing my research proposal, a phenomenology study of an elderly Australian CaLD minority population living with dementia. I have no intention of continuing as an academic, my goal is to complete the research on this identified gap in study. I want my work to make a positive difference to these people ASAP. My late father was “labelled a person with BPSD and having a challenging behaviour”. I didn’t see that at all…I had and have a different understanding and belief. Your other blog “Inclusion”, well my father only experienced inclusion because my Mum and I stayed with him every day/ all day for 16 months (of course during the allowed times only). Look forward to hearing more from you xx

    • Looking forward to sharing our dissertations!!! If feels like a truly crazy dream for me to have, especially as things like reading and referencing are so much harder for me… but hey, why not try, Even if I fail or don’t finish it, it will be truly meaningful and engaging ‘activity’ for me.

  8. Good morning Kate, Well, another great blog for the rest of us to spread the word and follow up with colleagues and students at every possible opportunity. Here in the South East of England, as everywhere else, we strive to inform and educate, but most of all get people talking, debating and involved with improving knowledge, skills in care, and attitudes toward people with a dementia. Thank you for providing that springboard.

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  10. Hi Kate,

    I just want to sincerely thank you for your efforts in writing your blog and encourage you in the incredible work that you are doing. You are shedding such light on this area and are an inspiration to many.

    I am in the beginning stages of implementing a new project – Recovery Approach to Dementia Care – in regional NSW, within a community setting. The Recovery Approach builds upon Person Centred Care and some of the core principles are inclusion and social access, redefining self outside of labels, strengths based, and fostering hope. This model has been used in the mental health setting for years. I believe that the health system in Australia can improve so much in relation to dementia care, both in policy and in practice. I hope that I too may be able to impact this positively as you are also doing – time will tell!

    Again thank you, you are helping to pave the way for the future care and support of many people living with dementia.

    Kind regards,
    Rachel.

    • Hi Kate and Rachel,

      I am interested to know more about this initiative Rachel and wonder if you are able to share it or direct me towards the guiding document? I hope to implement something like this and it would be helpful to tap into work which has already occurred rather than recreate any wheels. I would be grateful to hear from you.

      Cheers,
      Denise

      • Hey Denise,

        Thanks for your comment!

        Unfortunately there aren’t any documents readily available online for the project yet and it isn’t appropriate for me to post many details about the project online at this stage.

        I am more than happy for you (or other professionals interested in the project) to send me an email and we can speak more – I have asked Kate to connect us both privately.

        I look forward to hearing from you.

        Kind regards,
        Rachel.

    • Hi Kate
      I am also interested to know more about your work. When I was in the UK people like John Keady and Trevor Adams were writing about this model. I have not kept up with developments over there so not aware if this is utilsed in clinical practice. Hence I am keen to know more. Good on you ! Denise

  11. Hi Kate–speaking as a scientist (zoologist) with some education in social sciences (education) I am very aware that how we use language and how we describe things affects how we think and feel. I totally support you and other’s efforts to revolutionise the care and support of people with dementia by removing some of the insidious language that undermines them being seen as individual humans. Good on you!

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